Parallels

5:30 am

Sat June 1, 2013

After Years Of War, Ugandan Children Face New Deadly Threat

Grace Aber stands in the shade of a mango tree with her children in the remote village of Tumangu in northern Uganda. Four of Aber's nine children have been diagnosed with nodding syndrome, starting with Partick (front), who first showed symptoms in 2002.

Matthew Kielty for NPR

The village of Tumangu, in northern Uganda, defines remote. It's hard even to find on maps. But it shows up frequently in news stories. Grace Aber is about to show me why.

She leads me down a narrow dirt path, passing a couple of clay huts. We get to a big mango tree. Aber's 17-year-old son, Patrick, sits under it. His shoulders are slouched. His eyes look like glass.

Aber tries to get him to say his name. A small grunt is the only sound he makes.

Patrick wasn't always like this, Aber says. He used to love going to school, reading. But a decade ago, when he was about 6, he began to change.

"It started with the nodding of the head," Aber recalls.

First the nodding, then seizures, with Patrick writhing on the ground, screaming.

Aber didn't know that what she was witnessing was the onset of what is known as nodding syndrome, a strange and debilitating illness that affects only children in a small pocket of East Africa. Its cause is unknown.

Patrick's convulsions continued a few times a day, every day. He stopped growing. He stopped talking.

And then, a year later, Aber noticed Patrick's little sister, Amiro Alice, stumbling around. A few days later, Aber realized that Alice was also nodding. A couple of years later, a third child. Then a fourth.

"My heart was scared. How does this disease catch someone?" she asks. "We want researchers to tell us the ways that someone catches this disease."

Scott Dowell, with the Centers for Disease Control and Prevention in Atlanta, is leading its investigation into nodding syndrome. Usually, he says, investigators can figure out the cause of a strange outbreak after just a few weeks. This hasn't been the case here.

"Nodding syndrome is definitely unusual in that it's a much tougher nut to crack," he says.

For more than three years, epidemiologists at the CDC have been trying to crack it. They've gone to northern Uganda and collected blood samples, tissue samples, spinal fluid. Dowell says they've looked at all the infectious causes that CDC can test for, but the explanation is still not clear.

As a consequence, says Paul Bukuluki, a researcher in Uganda, people are trying to find their own answers. Bukuluki isn't interested in the cause of nodding syndrome, but rather, in how people can cope with the illness — and the unknown.

So, for the past year, Bukuluki and a small team of researchers have been traveling to the affected region of Kitgum, asking parents what they think the cause is. And he heard the same thing repeatedly: the Lord's Resistance Army's brutal, two-decade-long guerrilla war in northern Uganda.

During the conflict, tens of thousands of children were kidnapped; people were forced into sex slavery; massacres were commonplace.

People fled their homes in droves. A decade ago, nearly 2 million people — about 95 percent of those living in the region known as Acholiland — moved into internally displaced person camps

And there, in the camps, children suffered from nodding syndrome — sometimes two, three or four children in the same family.

Santa Olok, who lives in Aber's village, also has a daughter with nodding syndrome. She is a member of the region's predominant Acholi ethnic group. For her, the cause of the disease lies in a tribal belief in ancestor spirits.

"The spirits of the people who died here [during the war]," she says, "who are returning to hurt or haunt the people."

Bukuluki says he heard this answer, too. And it matters to him because this sort of reasoning goes beyond just figuring out the cause of nodding syndrome. It tries to answer an entirely different question: Why us?

Because Tumangu, with nearly 100 children diagnosed with nodding syndrome, has suffered decades of chaos and loss.

"One generation lost due to ... the two-decade war," Bukuluki says, "and another generation now being lost to nodding syndrome."

Back at Aber's home, it's dusk, and she has just gotten back from the garden. She works there daily; she says she has to.

"But you cultivate half-heartedly because your heart is at home with the sick children. The problems we face with these children because of this disease are unspeakable. It is unbearable at times," she says. "Sometimes in frustration we just wish that they would all die so that we could rest. Our future is not here. What I think could help is not here."

Now, to a small pocket of Africa and a strange and deadly disease. It only affects children, its cause is unknown and its telltale symptom is uncontrollable nodding. The illness has affected more than 3,000 children since it first appeared in South Sudan in the early 1990s. Most recently, it's surfaced in parts of northern Uganda. In one of the worst affected villages, Matthew Kielty reports.

MATTHEW KIELTY, BYLINE: The village of Tumangu in northern Uganda defines remote. It's hard even to find on maps. But it shows up again and again in news stories. Grace Aber is about to show me why. After welcoming me to her home, she leads me down a narrow dirt path.

(SOUNDBITE OF FOOTSTEPS)

KIELTY: We pass a couple of clay huts as we walk for a few minutes until we get to a big mango tree. And sitting on a log under the tree is Aber's 17-year-old son, Patrick. His shoulders are slouched. His eyes look like glass. Aber tries to get him to say his name.

GRACE ABER: (Foreign language spoken)

(SOUNDBITE OF GRUNT)

KIELTY: That small grunt is the only sound he makes.

(SOUNDBITE OF GRUNT)

KIELTY: Grace Aber says Patrick was not always like this.

ABER: (Through Translator) He used to love going to school.

KIELTY: He used to like to read, but about a decade ago, he began to change.

(SOUNDBITE OF DOOR OPENING)

KIELTY: Aber leads me into her clay hut. She sits me down to tell me that Patrick wasn't always like this, that the change began when he was about six years old.

ABER: (Foreign language spoken)

KIELTY: First the nodding and then seizures, with Patrick writhing on the ground, screaming.

ABER: (Through Translator) And when I saw these signs, I didn't know what the disease was.

KIELTY: So, Patrick's convulsions continued a few times a day, every day. He stopped growing. He stopped talking. And then, a year later, Aber noticed something different about Patrick's little sister, Amiro Alice.

ABER: (Foreign language spoken)

KIELTY: One morning she noticed Alice stumbling around.

ABER: (Foreign language spoken)

KIELTY: A few days later, Aber realized that Alice was also nodding. A couple of years later, a third child, and then a fourth.

ABER: (Through Translator) My heart was scared. How does this disease catch someone? We want researchers to tell us the ways that someone catches this disease.

KIELTY: Scott Dowell, with the Centers for Disease Control and Prevention in Atlanta, is the lead investigator into what is now known as nodding syndrome. He said investigators usually can figure out the cause of a disease after a few weeks of investigation. But not so with nodding syndrome.

SCOTT DOWELL: Yeah. The answer comes within a couple of weeks of investigation. But nodding syndrome is definitely unusual in that it's a much tougher nut to crack.

KIELTY: For over three years, epidemiologists at the CDC have been trying to crack it. They've gone to northern Uganda and collected blood samples, tissue samples, spinal fluid; exploring, among other things, whether nodding syndrome could be caused by some kind of chemical exposure or perhaps a response to a local parasite, or a vitamin deficiency, or genetics. Dowell says they've looked at all the infectious causes that CDC can test for.

DOWELL: Which is basically everything known but the explanation is still not clear.

PAUL BUKULUKI: So, people are trying to find their own answers because even the sense telling them that they don't know the cause of nodding syndrome.

KIELTY: Paul Bukuluki is a researcher in Uganda who isn't interested in the cause of nodding syndrome, but...

BUKULUKI: To know how people cope, how people are coping with this syndrome.

KIELTY: How people cope with the unknown. So, for the past year, Bukuluki and a small team of researchers have been traveling to the affected region of Kitgum, asking parents what they think the cause is. And he heard the same thing over and over.

BUKULUKI: Yes, people were associating nodding syndrome with the war.

KIELTY: The war. Not everyone pointed to it, but enough people that Bukuluki thought there was something there. Now, this is a war that you may have heard about.

BUKULUKI: You have heard about the Lord's Resistance Army.

KIELTY: The LRA, which has waged a brutal, two-decade-long guerrilla war in northern Uganda with...

BUKULUKI: People being kidnapped.

KIELTY: Tens of thousands of children.

BUKULUKI: People being forced into sex slavery.

KIELTY: People being massacred. So, people fled their homes in droves. A decade ago, nearly two million people - about 95 percent of those living what is called Acholiland - moved into internally displaced person camps.

SANTA OLOK: (Through Translator) There in the camps, we saw so many children suffering from this disease. In the other houses, it was two or three or four children.

KIELTY: This is Santa Olok. She also lives in Tumangu and has a daughter with nodding syndrome. She is a member of the region's predominant Acholi ethnic group. For her, the answer lies in a tribal belief in ancestor spirits.

OLOK: (Through Translator) The spirits of the people who died here...

KIELTY: People killed during the war.

OLOK: (Through Translator) ...who are returning to hurt or haunt the people.

KIELTY: Bukuluki says he heard this answer, too. And why it matters to him is that this sort of reasoning goes beyond just figuring out the cause of nodding syndrome. Rather, it tries to answer this whole other question.

BUKULUKI: This question: Why us?

KIELTY: Because for a place like Tumangu, with nearly 100 children diagnosed with nodding syndrome, it's been decades of chaos and loss.

BUKULUKI: That's right. One generation lost due to war, the two-decade war, and another generation is being being lost due to nodding syndrome.

(SOUNDBITE OF RUSTLING)

KIELTY: Back at Grace Aber's home it's dusk and the entire family is gathered in the common area. A four-year-old boy pushes around a bicycle rim with a stick to entertain himself. Aber has just gotten back from the garden. She works the garden daily; she says she has to.

ABER: (Through Translator) You cultivate half-heartedly because your heart is at home with the sick children. The problems we face with these children because of this disease are unspeakable. Sometimes in frustration we just wish that they would all die so that we could rest. Our future is not here. What I think could help us is not here.

KIELTY: But beginning last year, the ministry of health mounted a response to nodding syndrome. The basic idea is to try to give children, like Grace's son Patrick, some life of normalcy. Tomorrow, we'll look at how the ministry is trying to do that. For NPR News, I'm Matthew Kielty.

(SOUNDBITE OF MUSIC)

SIMON: Matthew Kielty is an NPR Above the Fray fellow, sponsored by the John Alexander Project. That's a group supporting young journalists and finding untold stories like the one we just heard. Tomorrow on WEEKEND EDITION, the medical community responds to nodding syndrome in Uganda.